Well it has been awhile since I have given an update on how Trey has been doing with his feeding progress. Unfortunately I don't have any super exciting news to report. We finally were forced to increase his tube feeding volume he gets a day because he pretty much decreased or stayed about the same weight since December. And obviously that is too long to stay on that growth path. And the arrival of Noah has definitely caused a regression in eating volume progress. I am happy to report that even though his caloric volume had to be increased he has started adding more foods to his current list of foods he will eat or at least try which is exciting. Our dietitian says we will attempt another tube feeding wean after they have seen an appropriate weight gain.
Trey was supposed to have some procedures done this next week at Mary Bridge and at Seattle Children's. But his 2 specialists up there suggested we wait until the lovely whooping cough epidemic has slowed down to especially keep our little Noah safe since he is the most at risk if he were to catch it. And with our luck we decided to be safe than sorry since the procedures are not urgent to get done.
So in August he will have to have a repeat MRI done at Children's to check the status of his Chiari 1 Malformation. He isn't displaying any physical symptoms that things have changed so the neurosurgeon was fine with postponing to have the scan done. He will have to be sedated for this testing which is a bummer because while we are up there he has to have a procedure done on his G-tube which also requires sedation.
Trey has some extra skin growth around his tube which normally can be burned off but the tissue sometimes becomes so thick which in his case has and could eventually cause problems with his tube placement. So it will need to be injected with a medicine that will hopefully shrink the excess tissue surrounding the outside of his tube and on the inside his stomach surrounding the tube also. But his GI doctor was also fine with us waiting because the tissue isn't continually growing or causing any problems at the present moment. So not a very fun reason to come up in August.
But on a happier note Trey is busier than ever these days. He is taking a mini hoops class (blog post to follow) which he loves and I have just signed him up for Tiny Tykes T-ball this summer. Which should be very entertaining. He of course loves being outside when the weather has permitted. We are definitely anxious for the warm weather to stick around.
The things that come out of this little boy's mouth makes us hysterically laugh and cringe at times. He as usual keeps us on our toes. He is becoming quite the little man. Three has been challenging but we love him to pieces.
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